In 1992, 23 year old Sharon McDonagh-Delves gave birth to a baby girl – me. Three months later, following some investigation that started while she was pregnant, her blood test for rheumatoid factor came back positive and she began being treated for Juvenile Rheumatoid Arthritis (JRA), a condition which explained the pain she’d been suffering since childhood.

More than 10 years and another baby later, in the specialist musculo-skeletal hospital that had been the cornerstone of her care – a hospital I will forever call ‘mummy’s hospital’ – another diagnosis was tacked onto her file: fibromyalgia.

“They told me they’d tested for sensitive tender points and I ticked enough of the boxes, so that meant fibromyalgia,” says Sharon. Diagnostic criteria require 11 out of 18 trigger points to be tender and produce pain if pressed, but this was never explained. “I knew arthritis was my joints and there was pain outside my joints, but that was it. Nobody told me what it was or even invited me to ask.”

Fibromyalgia trigger points generally are where tendons and muscles meet – which is why they appear on the upper and lower back as well as the neck – but they also occur around joints including the elbows, hips and knees; all of which she had been experiencing varying degrees of pain in anyway. Given that nobody explained what they were doing when they examined the trigger points, she didn’t even know what they were.

“I don’t think any one of them wrote down the word ‘fibromyalgia’, even though I said that my mum had it.”

“I didn’t know what was that and what was the arthritis. I didn’t know if it explained anything, if it changed anything,” Sharon says. “I didn’t know about the other symptoms. I didn’t know how or whether to tell people.”

One of the things I remember strongly from the time is my parents calling it “like arthritis, but in your muscles” when asked by friends, family or two very inquisitive children. When I asked, Sharon says, “I think I came up with that, I needed to try to simplify it. That’s the only way I could think to describe it.”

It would be nearly 10 more years of this as our only understanding before anything changed. Not long after I graduated from university, I was back at my old GP looking for an answer for what was causing my own pain. It had started five years or so earlier, just in my knees at the time, but was becoming increasingly more widespread. I’d seen rheumatology in two different hospitals, had six different physiotherapists and the rheumatoid factor blood test came back negative at least three times. I didn’t have JRA, that’s what they could tell me. But, when talking about my family history at these appointments, I don’t think any one of them wrote down the word ‘fibromyalgia’, even though I said that my mum had it. I think one of the physiotherapists didn’t even know what it was.

The young GP looked at my history, asked me some questions, and ordered the rheumatoid factor blood test one last time, just to be certain. Then he asked me a very simple question: “What do you know about fibromyalgia?”

“It’s like a smoke alarm that is much too sensitive and keeps going off when it doesn’t need to, louder than it needs to, for longer than it needs to.”

As I sat looking rather blank, he explained it to me. In the simplest terms, it’s a problem with your nerves – you experience pain more, you experience pain that isn’t there. Pain is exhausting in general, and also your brain gets too clogged up with all these extra pain signals that shouldn’t really be there. But then he offered me a drug I could try while I was waiting for my own appointment at ‘mummy’s hospital’.

I was battered by side effects of the drug, gabapentin (Neurotonin), for a few months, before switching to the gold standard, the slightly more expensive pregabalin (Lyrica) not long after I’d had the appointment with the specialist. I ticked 12 boxes out of 18, I later found out when I received a copy of the letter that was sent to my GP – just sneaking in to a diagnosis. I still take pregabalin now, and I do notice it makes a difference.

Sharon has never been offered either of these drugs. “I don’t know if they interact with other stuff that I’m taking or something, but nobody has ever had that conversation with me!” she says. Recently, the same GP that I’d seen has started her on amitriptyline (Elavil), another regularly prescribed drug for this kind of pain, but that came more than two years after I started taking pregabalin.

The vast majority of the knowledge that we both have regarding fibromyalgia came from my latest physiotherapist at the specialist hospital. Your nerves are overexcited, which sends too much information to the brain, which is at a slightly reduced capacity to deal with it all when it arrives, and it sends back out far too many pain signals. Or, condensed into something very easy to remember when you’re mid flare and trying to calm yourself down: it’s like a smoke alarm that is much too sensitive and keeps going off when it doesn’t need to, louder than it needs to, for longer than it needs to. You need a smoke alarm – pain is an important signal in the body, but yours has got itself dialed up to 100.

“We have to deal with high levels of fatigue, a dullness of mental faculties from time to time, and some extraneous sensations that aren’t pain.”

Pain is the thing most people associate with fibromyalgia, and it is a huge part of the condition. But that’s not all, folks. Oh no. We have to deal with high levels of fatigue, a dullness of mental faculties from time to time – known as ‘brain fog’ – and some extraneous sensations that aren’t pain, like pins and needles for no reason.

It’s not uncommon to find me sat staring into space because I can’t remember the word for something, or one of us will forget the name of someone we see every single day. It isn’t something people think of immediately when you tell them you have fibromyalgia, and I often think a lot of people think I’m taking the piss. Sharon says “I never even knew it was a thing – I was worried I was developing dementia or something! I couldn’t organise my thoughts or remember stuff.”

A symptom I have that friends sometimes find unusual is that I can’t put the shower directly onto my feet – I have to let it run down from my legs – because the jetting water feels like tiny needles. We both suffer with tingling sensations creeping across trigger points, irritating rather than painful, but still disconcerting.

“I want to know that someone diagnosed in the next decade won’t be blank faced and overwhelmed in a doctor’s office after more than five years of unexplained pain.”

Understanding of fibromyalgia in the medical community seems to be increasing. Our preferred GP seems to understand the condition very well and be very understanding of the problems that we are having. Sharon has had physiotherapy, hydrotherapy and a pulse therapy for her hips that she still isn’t sure what condition is actually being treated. We (try to) follow an exercise plan, and have slowly learned not to push ourselves.

Most people still don’t know all that much about fibromyalgia. I think the Lady Gaga documentary has helped, but even among my friends they don’t know the details, and I am known for talking about it a lot. People with fibromyalgia can and do qualify for disability benefits, but it isn’t a slam dunk. In addition, it’s one of these variable conditions that get people labelled as ‘scroungers’. Sharon says, of not knowing much about fibromyalgia for the majority of the time she has had the diagnosis: “I felt like a fake, like I was complaining about this pain that wasn’t there.” Because it changes so quickly, people do still perceive it like this, and explaining can take more energy than we have.

What do we want for the future? Well, Sharon wants education, for the man in the street, for people in medicine, and for those who are living with the condition who don’t know all that much about it. I want to know that someone diagnosed in the next decade – 10 years after me, and 20 after my mother – won’t be blank faced and overwhelmed in a doctor’s office after more than five years of unexplained pain; because the doctor won’t have let it get that far.

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May 12th is International Fibromyalgia Awareness Day. You can find out more about fibromyalgia from the Fibromyalgia Association.

Caroline Marie McDonagh-Delves

Caroline is an intersectional feminist, body positive fat activist, and a champion of disability awareness. She is the No Bull Wellness Guru, which considering her chronic illness, is more for irony than anything else.

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